国外的一些中国妈妈们讨论自闭症二
1再次感谢Siee辛苦发帖。前半内容讨论何谓“正常”和“异常”,如何训练;后半以高功能孤独症的诊断为主,对刚被诊断或未诊断但猜疑中的家长们很有帮助,内容太多,发到第三部分里;
2欣赏了一下文中的音乐小天才的曲子,还真不一般啊;
3Siee一次次往评论上贴会不会很麻烦,要不直接发我邮箱?---看您觉得怎么好都行。最后还是那句话,论坛的资料很棒,还要继续麻烦您了!另外有空的话帮我看看译文吧,以免毁人不倦。Thanx a lot!
下文中蓝色部分为译文。
岩雨
家有自闭儿
Please let us to use this thread as a discussion forum for children with developmental issues.
The first goal is to offer each other support. It is hard for parents to deal with many things when their kids have developmental issues. It takes a lot of extra time and effort to get the kids the help they need, and a lot of extra patience too. It is especially hard when a parent first suspects the problem and first receives the diagnosis. We have all felt some panic at these times.
A second goal is to share information. There is a lot of information on the Web, in books and in people's experiences.
Each school district and each state has its own laws. Information posted here may apply to some schools/states but not others.
Let's use this forum to help each other.
Thanks to all.
请让我们以下面的帖子作为儿童发育障碍论坛的主题进行讨论。
第一个目标是提供相互支持。如果孩子有发育障碍,父母处理许多事情时会倍感艰难。他们需要额外的时间,大量的精力和格外的耐心为孩子提供帮助。而最困难的时刻,就是当父母第一次怀疑孩子存在问题和首先收到明确的诊断。我们都曾经在彼时彼刻感到过惊慌失措和一丝恐惧。
第二个目标是共享信息。有很多网上的信息,书籍和人们的经验可以彼此分享。
每个学区及每个州都有自己的法律。相关信息张贴在这里可以对各位申请到某些州的某些(最合适的)学校有益。
让我们利用这个论坛互相帮助。
感谢大家。
----------Here is the original thread-------------(下为原帖)
我七岁的儿子是个(高功能)自闭儿(High functioning autistic child). Re: 家有自闭儿 岩雨, 我不确信这个论坛的人就可以提供很多实际的帮助而不仅是鼓励。有一些专门的特殊教育机构,他们提供社会交往的团体表演以展示社会生活的社交语言。此外,大量的网站上也有该怎么做的办法。 Re: 家有自闭儿 Thanks all for the encouraging. Certainly need some from time to time, so I can look beyond just now. Re: 家有自闭儿 岩雨, 谢谢您谈起您的儿子。我的小儿子也有类似的问题。他现在是三岁半,几乎不会说话。他喜欢看儿童电视节目。他可以说出许多角色的名称,可以阅读许多数字。但他从未叫过“妈妈”,“爸爸”或其他简单的话。他的医生开始说他有自闭症,但半小时后又说他没有。即使在数次面访后,她仍然不能下诊断。所以请不要太担心这个名字HFAC。这些语迟的孩子和别人比只是有点不同罢了。继续鼓励做他擅长的,多给他一点时间,按照他自己的节奏去发展沟通技巧。我发现这对我儿子有效,自己也觉得少了些压力。意识到孩子有严重的语言发展问题后我辞职了。他还上整天幼儿园也很享受幼儿园的时光。他和兄弟姐妹玩儿得很好,也非常喜欢我的拥抱,喜欢和我偎依在一起。我尽我所能地爱他,只要他高兴,总有一天,他可以像其他的孩子一样说话。顺便说一句,我相信言语治疗师,他们所做的就是教他手语。 ksom 写道: bluewave, 根据你所说的,你的儿子似乎语言发育迟缓。你检查过他的听力吗?讲话的延迟,许多是听力问题引起的。解决了听觉问题,语言就会爆发。 My son love to sing and he can speak----actually, he "talks" a lot, but not in the real sense of talking, like a conver[NextPage]sation. He can read very early on (also say nursery rhythms, sing kids songs), so there is no problem with him making sound. The problem is communication. 除了唱歌/舞蹈表演他不喜欢看电视,。我估计他是追不上故事的迅速发展,大概是hyperlexia ---意味着,当他听了语言后,要将语言在脑子里写下来,再读出来才能够理解---所以他需要较长的时间来明白一句话的意思。当我们跟他谈话时,我们可以等待,但其他人特别是孩子,是不会等他的。 是的,你说得对,只要他很高兴就好...
从三岁起,他上了三年的特别学校,去年上了Kindergarten, 现在上一年级。他的功课没问题,(reading and math at 2nd or 3rd grade level), 但是没有任何同龄的朋友。
他现在一半时间在普通班(one teacher, 20 kids),一半时间在特别班(one teacher, two aid, 6 kids)。 学校还给他配了个personal aid,走到哪跟到哪。
他可以和我们对话,和他很熟识的大人对话,但不会和他同龄的孩子玩儿。
他不喜欢体育,喜欢音乐,也喜欢画画。他原不能容忍听故事,一定要自己念(he can re[NextPage]ad before he was two, before he can talk)。 近来有所改进,可以和我轮流读。 他画得不错,音乐也写的不错, 可他的故事写的惨不忍睹----没头没尾,上一句和下一句互不相干。
看着他成长真使我感到生命是多么得奇妙。对他来说,凡是学校需要教的东东都容易(reading, math)。凡是别人不用教的东东都特难 (ask for food, water, how to talk with others)。
想看看CND上的大侠们有没有经验或建议可帮他和同龄的小朋友玩儿?
Please check out his music site if you are interested.
Here is the site:
https:
Dear 岩雨:
Your son is a very special kid, definitely a genius in music, maybe more areas. As to the daily functioning side, it will just take him longer to learn. If you think about it, regular people like us, even if the daily functioning side comes to us easy, we may never even dream of achieving the kind of gift(s) your son has displayed, no matter how hard we try. In that sense, your son got a good deal from God.
On the other hand, it does mean a lot of extra love, effort, and patience from you and your husband. Well, I believe God must think you have enough of all that to handle a genius son.
The fact that your son has a happy nature is a true bonus. My heart just melts everytime I see my son's smile with his two dimples. I bet you are the same.
I look forward to hearing great music written by your son played by the best orchestra someday, and I am sure I will hear your heart singing along with the music.
My best wishes to you and your family!
Please just stay cheerful and thankful to all the progresses you son makes, big or small, just like every other parent.
Your son is very intelligent and gifted. And I too find extremly smart kids often appear to be socially outsiders, however, it's more like a personality trait in non-autistic children.
With such a gifted child, frankly I think you can set your goal so that he can have a normal or near normal conversation in his adult life, at the same time, l[NextPage]ike others said, encourage him to fully develop his potential and talent. He could be a great musician or writer or both later in his life.
你儿子非常特别,他毫无疑问是个音乐天才,没准儿还是更多领域的(天才)。至于日常生活方面,他只是需要较长时间去学习。如果你想一想,我们这些普通人虽然可以轻而易举的适应日常社会生活,但我们可能做梦都想不敢想拥有如你儿子所展示的那份天赋---------无论我们多努力。从这个意义上讲,上帝赠与你的儿子比我们更多。
另一方面,它意味着你和你的丈夫需要付出加倍的爱,努力和耐心。我相信上帝一定认为你在这方面有足够的能力可以去养育一个天才儿子。
此外你儿子的快乐天性简直是个送你的大红包。每次看到我儿子伴着两个酒窝的笑容我的心就如融化一般。我敢打赌你也是相同的。
我期待着有一天能够欣赏到由最好的管弦乐团演奏的你的儿子的美妙作品,我还相信我会听你的与音乐相伴的心灵吟唱。
真诚祝愿您和您的家人!
请像所有其他家长一样保持愉快和感恩的心,去面对你儿子的所有进步,无论大或小。
你的儿子很聪明,很有天分。我也觉得极度聪明的孩子常似社会局外人,但是对于非自闭症儿童,此特点只能算是超有个性?(这句有点不明白)
有这样的天才儿童,坦白说,一方面你要设定努力的目标,争取在他成年时能够正常或接近正常的交流。另一方面,如其他人说,鼓励他充分发挥自己的潜能和才华,今后他可以成长为一个伟大的音乐家或/兼作曲家。
Re: 家有自闭儿
I am not sure if people on this forum can offer much real help other than encouragement. There are some institutions which specialize those kind of education. They offer social group playing by showing them what to say during the play time. Also, there are a lot of web sites which can give some ideas as what to do.
My 11-year-old nephew has the same thing (High functioning autistic child). He can read by himself at 3, and loved boring cookbooks at 4. He would sit there read an inch thick cookbook for hours. When he was 6, the test shows his reading, vocabulary was at 10th grade level. But he has problem interacting with other kids, manage his daily life, has all these symptoms you mentioned here. All he wants to do is sit there, read.
It was said that HFAC kids are more common among two-engineer family. Silicon Valley has high concentration of HFAC kids. I know two engineer families have 3 H[NextPage]FACs in total 5 children.
However, for some reason it is not common among Chinese. Maybe our Chinese are too practical to be a HFAC?
My sister in-law spent a lot time/energy/love with her oldest son, because he's a HFAC. He is getting better and better after all these years' effort. So your son will be better too. Just keep your loving care and utilize all the resources you can get. This society is the best for every young genius or fools. If your son is in China, he'll have extremely difficult time.我11岁的侄子同样是高功能自闭症儿童(HFAC)。他3岁时可以自己阅读,4岁时爱上了沉闷食谱。他会坐上几个小时读食谱,摞起来足有一英寸厚。当他6岁时,测试表明他的阅读,词汇是在10年级的水平。但他的问题在于和其他孩子互动,生活自理,还有所有你在这里提到的症状。他想做的是坐在那里,阅读。
有人说,HFAC孩子在两个工程师的家庭更普遍。硅谷家庭有HFAC孩子的比例较高。我知道某个双工程师的家庭中5个孩子里有3个是HFAC。
然而,由于某种原因,中国里并不常见-------也许我们中国人太实际了不会得HFAC?
我嫂子花了很多时间/精力关爱上了她的大儿子,因为他是HFAC。通过这些年的努力他越来越好。所以,你的儿子也会更好的。只要保持您的充满爱的关怀,并利用一切可用的资源。这个社会无论是对于天才或傻瓜都是最好的社会。如果你的儿子是在中国,他将面对非常艰难的岁月。
Right now, every night, the best time is sit there and listen to him playing the piano, classical pieces, his own pieces or improvises.
Wish someday he can get to know more about his surroundings.
Yes, I do join the local parents group for this.
感谢所有的鼓舞。不时的鼓励会令我不断超越。
现在,每天晚上,最美好的时光就是坐在那里,听他演奏钢琴,古典的,他创作的或即兴的。
希望有一天他能更多地了解他周围的世界。
是的,我参加这个家长组。
I posted here hope to find someone with similar experience. I will write more tonight, as I have to leave now.
写此贴希望在这里能找到类似经验的人。今晚再写,下先。
Thank you for telling us about your son. My youngest son has similar problem. He is now three and half and barely talks. He enjoys watching kids' show on TV. He can call out names of a few dozen characters in many different shows. He can read nume[NextPage]rical numbers by himself. But he doesn't call "Mom", "Dad" or other simple words. His doctor first said he had Autism but half an hour later said he didn't have Autism, she couldn't give us any diagnosis even after a few office visits. So please don't be too worry about the name HFAC. These late talkers are just special and different from other kids. Keep encourage him on doing what he is good at and give him more time for him to develop his communication skills in his own pace. I found this approach seemed to work for my son, and makes myself feel a lot less stressfull. I did quit my job after realizing he had severe speech delay. He still goes to full day preschool and has good time there. He plays with siblings at home too. He loves lots of hugs and cuddling from me. We gives him as much love as we could. I think as long as he is happy. Some day he would start to talk like other kids. By the way, I don't rely/trust much on speech therapists. All they were doing was trying to teach him sign language.
One thing you may try is to let your son learn to sing, since he is so talented in music. He should enjoy it. This might be the best way to make him "saying" words. I saw a lot of progress after encouraging my little boy to sing along his favorite kids songs on TV.
Let's encourage each other. Have a nice holiday season!
有一件事是你可以尝试---------让你儿子学唱歌,因为他有如此的音乐才华,应该会很享受。这可能是最好的使他“说[NextPage]”的办法。我总鼓励的小儿子唱他最喜欢的电视节目歌曲,现在有了很大的进步。
让我们互相鼓励。祝你渡个好假!
I agree. I think as parents here, we need to be careful of what school and others think as 'normal'. I think sometimes school push too hard to make kids 'normal'. They are probably afraid some kids would become outcasts and end up shotting others, so they want to everyone to be 'normal'.
I think it is more important to make sure your son is confident in himself and feel comfortable with his actions. If he does not care to talk to others, why force him? If he wants to talk but don't know how, then he has the motivation and it would not be too hard to teach him. Don't expect him to like the other kids. I think the focus should not be help him talk or interact like other. The focus should be help him to accomplish what he wants to do.
同意。我认为作为家长,我们需要小心在意的就是什么样才是学校和他人眼中的“正常”。我有时觉得学校过分推动孩子们变为所谓正常。他们可能是担心有些孩子会成为社会弃儿,并最终制造(校园)枪击案(这样事儿星星们才干不出来呢),所以他们希望每个人都符合他们心中的“正常”。
我觉得更重要的是要确保你的儿子有自信,做事放松。如果他不在意和别人交谈,为什么非强迫他呢?如果他想说话,但不知道如何做,那么他就有了动机,教他就不会太难了。不要期望他像其他孩子一样。我觉得重点不应该放在帮助他说话或像其他人一样互动,而是帮助他完成他想做的事。
Re: 家有自闭儿
我的朋友也有个自闭的儿子,都25了,可是他对儿子远比对一切正常的女儿,17岁,感到放心。儿子虽然没有谋生能力,但也从不给他找麻烦;女儿倒害的他几次差点40几岁当爷爷,上班时最害怕女儿给他打电话,或者警察找上门。
这孩子待人特别的gentle,也是只爱跟熟人讲话;但是如果谈论的话题是狗呀猫呀之类,他也能讲个一大箩筐。他还自己拍了一些有关狗的纪录片,得到了不少好评。对了,他也是不到两岁就会自己读书,让周围人很惊讶了一把。
我没别的意思,人人都有一些缺陷,别太强求要孩子“一切正常”,他快乐就挺好。
From what you are saying, your son seem has speach delay. Have you checked his ears? Many of the speach delay is caursed by hearing problems. Fixed the hearing problem, the speach just takes off.
He did make a lot progress in the last year or so, so now he can tell me something----like the zipper on his pants hurt him, or he wants to have a sleep over in his piano teacher's house on the third floor. However, as much as I understand him, I do not think other kids can. Even other adults will have trouble at the begining. People know him for a while understand him better. He repeats questions and statement, like to talk the topic he enjoy. Also, sentance jump from one topic to another, or incomplete sentances. Many times, he just do not know how to say something or how to answer a question.
He doesn't like to watch TV, except singing/dancing shows. I guess that he doesn't follow the story line as fast. He probably is hyperlexia---means that when he hears something, he will write the sentance in his mind and read the sentance to understand it---so it takes time. When we talk with him, we wait. But other people, expecial kids, will not.
Yes, you are right, as long as he is happy...
Yes, let's encourage each other.
我的儿子爱唱歌也能讲话----实际上,他是个话唠,但不是真正意义上的对话。他很早就可以阅读(也会说儿歌,唱儿童歌曲),所以他发声不存在问题,问题是沟通。
在过去一年多他取得了很大的进步,现在他可以告诉我一些事情,比如他的裤子拉链夹到他了,或者他希望在他的钢琴老师家的三楼借宿一晚。不过,虽然我理解他,我不认为其他的孩子也可以,即使是成年人在开始接触他的时候也很难听明白,人们多了解他后,就能听懂多些了。他不断重复问题/语句和他喜欢的话题,他的语言很跳跃,会从一个话题跳到另一个,或跳到一句不完整的话。很多时候,他都不知道如何表达或如何回答问题。(表现非常像女儿,虽然她现在说得好多了)
是的,让我们互相鼓励。